WHO ME/CFS coding - April to May 2018

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IAFME: International Association for ME

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Updates on status of ICD-11 and changes to other classification and terminology systems
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Not so simple answer:

First, some declarations:

I have no involvement with Action for M.E.'s advocacy work towards raising the profile of ME, in general, via Geneva or via Member States.

I am not involved in the "International Alliance."

I advise selected international ME organizations, on an ad hoc basis, on developments with the revision of coding, classification and terminology systems and on technical matters associated with these systems.

Since last September, I have worked closely with the Countess of Mar (as a Parliamentarian and as chair of Forward-ME) providing briefing materials, drafting documents and advising, generally, in relation to dialogues that have been established with SNOMED CT International, the UK SNOMED CT National Release Centre, and also with WHO's Director of Information, Evidence and Research and with other WHO leads for the ICD Revision process.

Edited to insert: NB: This arrangement ceased on 7 May, 2018, following a letter from the Countess of Mar terminating this arrangement.

I have had no involvement with the presentation that was given by Dr O'Leary at the 28 March Forward-ME meeting, or with the content of either of the two documents issued by Dr O'Leary in connection with that presentation, or with the statement released by the Countess of Mar in response to the first of those two documents. I cannot support a number of opinions and statements expressed in those documents.

I am currently engaged with another advocate in the production of materials to assist stakeholders in navigating the complexities of the various disease classification and terminology systems and to provide clarity in response to the three documents mentioned above.



Having got these declarations out of the way:

I'm afraid it's not that simple.

In early 2013, ICD Revision (or TAG Neurology) inexplicably removed the three G93.3 legacy terms from the public version of the ICD-11 Beta platform.

Following lobbying by myself in collaboration with selected international advocacy groups, the three terms were restored to the Beta draft, on March 26, 2017 with this caveat:

“While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”


On March 27, 2017, Mary Dimmock and I submitted our own detailed proposals and rationale, which can be found here:

http://bit.ly/ICD11proposal

This proposal remains unprocessed.


The WHO had clarified several times, in 2015, that there was "no proposal and no intention to locate CFS, ME under the Mental and behavioural disorders chapter." In February, this year, WHO's Dr Robert Jakob also stated that they will not "dump CFS in the Signs and Symptoms chapter."

No further proposals were submitted by ICD Revision or on behalf of TAG Neuology, until November 6, 2017.

The TAG for Neurology had ceased operations in October 2016, so responsibility for the G93.3 legacy terms now lies with WHO classification experts, the WHO department for Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and the new Medical Scientific Advisory Committee (MSAC), that will be processing over 1000 outstanding proposals.


On November 6, 2017, WHO's Dr Tarun Dua submitted a new proposal via the Beta draft Proposal Mechanism.

Dr Dua is Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and specializes in dementia, epilepsy and some other neurological disorders. She is the former Managing editor and WHO secretariat to TAG Neurology (which as I say, had ceased operations in October 2016).


Her proposal is for Deletion of Postviral fatigue syndrome from the Disorders of the nervous system chapter and relocation of "Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)" [sic] to the Symptom, signs chapter under parent: Symptoms, signs or clinical findings of the musculoskeletal system.

Dr Dua has clarified that the proposal has been submitted on behalf of Topic Advisory Group on Diseases of the Nervous System [TAG Neurology] and that it "reiterates the TAG’s earlier conclusions." Dr Dua would not provide answers to any of the other questions that have been raised with her.

Following an exchange between the Countess of Mar and Dr Dua's line manager, Dr Saxena, on January 29, 2018, "Team WHO" (likely Dr Robert Jakob's Beta admin account) posted a message on the proposal mechanism:

"...Any decisions regarding this entity are on hold until the results of a review become available."

(Part of the remit of TAG groups had been to conduct scientific reviews for specific categories or category blocks, where it was felt these might be required. In February 2017, Dr Jakob had referred to an ongoing "scientific review". A couple of months later, the Written Response to an Australian Senate Question had also stated, "WHO has advised that the final classification in the ICD-11 will be decided based on an extensive scientific review.")


WHO's Dr Grove has also reiterated that a systematic review will determine if the [G93.3 legacy] categories need to be moved to any other specific chapter of ICD-11.

And he later clarified:

That the draft ICD-11 will be frozen for finalization at the end of May in preparation for the release of an initial version of ICD-11, in June 2018.

That the scientific review is expected to be completed by mid-April.

That the outcomes of the review will be provided for review by the Medical Scientific Advisory Committee (MSAC).​

That new proposals posted on the platform will become part of the workflows of the maintenance mechanism of ICD-11 and be processed in an annual cycle. Results will be communicated, as soon as the involved committees have agreed on the recommendation on how to go about a specific proposal.

That the current updating cycle foresees a 3 yearly updates to the classification structure, for the first update of ICD-11. Later updates to the classification structure may occur only at 5 yearly rates. Improvements in relation to user guidance, addition of terms or providing clarifications will be supported on an annual base.​

There has been no confirmation as to whether the "scientific review" was completed in April, and if so, whether any outcomes from that review are now with the MSAC, for their consideration, or how long the MSAC might take to evaluate any potential new recommendations.


So it remains unclear whether, or at what point, ICD Revision might post new proposals on the Proposal Mechanism.

It has not been clarified, either, but we assume that the joint proposal submitted by me and Mary Dimmock, in March 2017, is also "on hold" and that the Dr Dua proposal is similarly "on hold", pending the outcome of the review, and any new proposals potentially arising out of it.


Add to the above uncertainties...

Mary and I are still pressuring for Exclusions for CFS and ME under Bodily distress disorder.

Uncertainty also continues over whether the BSS disorder construct will be approved for the ICD-11 "Primary Care version" (the 27 mental disorder publication that is in preparation)* and if so, which criteria options might be proposed to be taken forward - one of which is for a BDS-like symptom cluster option, another is for a "simpler" criteria set.

*Note: The ICD-11 Primary Care version (27 mental disorders, only, is not a WHO mandatory classification). There is no available date for this publication's projected completion and release.


There is still the issue of the use for ICD-11 of the BDD term which is already in use for the differently conceptualized, BDS disorder construct, developed by Fink et al (2007, 2010).

See:

Why ICD-11 core version's BDD proposal IS VERY problematic for ME and CFS patients, and why exclusions are essential:

https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf


By rights, whatever is in the Beta draft at the point at which the draft is frozen at the end of May 2018, should go forward to the initial release, in June 2018.

But at any point after the initial release, we might potentially find new proposals posted by ICD Revision on the Proposal Mechanism for stakeholder review and comment.

We have asked how long stakeholders would be given to scrutinize and comment on any new proposals posted - but no clear answer has been provided.

The Proposals platform will be remaining open for new proposals from ICD Revision and from public stakeholders, after the initial version of ICD-11 has been released, in June.

So rather than thinking "WHO are already on side" and "the WHOs' position is already favourable to us" my experience with WHO and ICD Revision, since 2010, has been notable for ICD Revision's lack of transparency, for their obfuscation, for their failure to consult with stakeholder groups, for pissing us about for over ten years and still not making decisions, despite the significant body of literature and reports placed at their disposal (since mid 2015) and despite the fact that the initial version of ICD-11 is scheduled for release this June.

Notable also, for their ability to redirect stakeholders' questions to the Proposal Mechanism - then ignoring those questions.

For introducing the SSD-like, BDD into the core edition, when WHO has conducted no field trials specifically testing the safety, validity, reliability, utility, prevalence and acceptability of the "Bodily distress disorder" definition and criteria, as defined for ICD-11, in any patient populations.

For progressing with a disorder name (Bodily distress disorder) that is already used synonymously with the Fink disorder term "Bodily distress syndrome (BDS)", when researchers and clinicians, including Fink et al, themselves, do not distinguish between these two terms, and that as a result of the S3DWG's perversity, researchers and researcher/practitioners are now struggling to differentiate between two divergent disorder constructs, with very different criteria, which capture different patents sets.

So you must forgive me if I sound somewhat jaundiced and that I cannot agree with you that we are currently in a good place with ICD-11.


By the way, I am given to understand that meetings that took place in Geneva earlier this month were not specifically to discuss matters of coding and classification.

As a result of the documents issued in relation to BSS earlier this month, a significant number of enquiries have had to be fielded with requests for clarifications and I have been extremely burdened with extra work this last three weeks.

So I shall not be around much to add any further comment to this post.

But I should have some concise guides to current classification and coding issues to post here next week.


Suzy Chapman
Dx Revision Watch

 

Thank you for that @Dx Revision Watch

 

Very helpful and clear. Thanks.

 

Perhaps the following extracts taken from https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf will further help some? I will break into three further posts for ease of reading? If able, I would certainly recommend reading this submission by Suzy and Mary in its entirety; worth the effort for my part and my understanding for sure.

I would also like to hear some more with regards to your request for clarification from @Action for M.E.

Wishing everyone improved health and every happiness. John

 

You're welcome, Trish.

I should also have mentioned that Mary Dimmock and I have published on the Beta Proposal Mechanism, an analysis of the proposal posted by Dr Dua, apparently on behalf of TAG Neurology.

For those registered for access to the Beta Proposal Mechanism, our responses can be read here:

https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef

#12 Comment down

A formatted version of our analysis is available in PDF format at: http://bit.ly/2o8Gfbs

i.e. Dropbox:

https://www.dropbox.com/s/k98kwyjso... Submission to ICD Revision February 2018.pdf


An additional response from both of us is posted in Comment #12.

Suzy

 

"Kafkaesque" would sum up ICD Revision's modus operandi this last five years. And I have only scraped the surface in my post, above.

 

Thank you again for the huge amount you do for us Suzy @Dx Revision Watch

 

That was a lie.

http://apps.who.int/classifications/icd10/browse/2008/en#!/F48.0

G93.3 has always been an exclusionary diagnosis to how neurasthenia is used in the modern era.

It is not an alternative diagnosis. It is mutually exclusive.

 

You're welcome.

 

Indeed, there is an exclusion under F48.0 for G93.3.

For ICD-11, the coded-for entity, Neurasthenia, has been retired. It is subsumed, along with most of the ICD-10 F45.x Somatform disorder categories by the new single category, Bodily distress disorder, which was also added to SNOMED CT in July 2017.

Neurasthenia was retired from SNOMED CT some years ago, but the Netherlands SNOMED CT National Extension has retained the term in its country specific edition.

Now I really must go: I have a value pack of B & Q 6 inch nails to bite through this afternoon.

 

Hope you find some time to take care of yourself, Suzy.

 

Thank you, John, and needs to be read in the context of our March 2017 proposal and rationale:

Summary report:

http://bit.ly/ICD11proposal


Full March 2017 proposal and rationale:

https://dxrevisionwatch.files.wordp...al-g93-3-suzy-chapman-mary-dimmock-final2.pdf

 

And here is a post listing the international orgs who had supported our proposal, last year:

https://dxrevisionwatch.com/2017/04...r-proposal-for-g93-3-legacy-terms-for-icd-11/

 

Thanks Suzy. I don't know if you have already posted it (apologies if you have) but I think this Q and A document you and MD put together is very good.
https://dxrevisionwatch.files.wordp...osal-g93-3-q-and-a-april-2017-version-1-1.pdf

This is of particular concern (as I am sure you have already pointed out)
"
ICD-11's proposed BDD diagnosis can be applied to a percentage of patients with any general
medical condition like cancer, cardiovascular disease, COPD or diabetes, as well as a percentage
of the so-called, functional somatic syndromes, if the clinician considers the patient also meets
the criteria for BDD (or meets the very similar criteria for SSD, if using DSM-5).

So there is the potential for all patients diagnosed with medical conditions (or waiting for a
diagnosis) to attract an additional diagnosis of BDD or to be misdiagnosed with BDD. Patients
diagnosed with chronic fatigue syndrome or myalgic encephalomyeltis, or awaiting a diagnosis,
may be particularly vulnerable to misdiagnosis with, or misapplication of, an additional diagnosis
of bodily distress disorder."

 

I'm a bit concerned that I can't get to grips with this subject - the details are just going in through my eyes and running away somewhere like sand (cognitive problems) but I know it's important. Is there a plan or strategy that I might be able to support; some action of some kind? If a letter writing campaign to someone would be useful I can probably do that if someone writes a template for me to adapt.

 

No, I haven't posted that Q & A document from April 2017 here - so thanks for flagging this up, Sly Saint.

I also did this two page document which also discusses BDD:

Why is this proposal for ICD-11 so important?

https://dxrevisionwatch.files.wordp...93-3-q-and-a-april-2017-extract-version-2.pdf


The Description text for BDD, on the Beta draft, includes the following:

"If another health condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression."


The Description texts on the ICD-11 Beta draft were originally called "Definitions." Not all of these have been drafted yet or checked and edited. When the initial version of ICD-11 is released in June, the Description texts for some chapters may be omitted altogether as their completion is so patchy.

These fairly brief Description texts are not intended to be used by clinicians for diagnosing but as a guide for users of the ICD-11 MMS (which will be the equivalent of the ICD-10 Tabular List).

The ICD-10 Tabular List and the ICD-11 MMS are aimed at coders.


For the ICD-10 Mental, behavioural and neurocognitive disorders chapter (Chapter V), practitioners are directed to The ICD-10 Classification of Mental and Behavioural Disorders Clinical descriptions and diagnostic guidelines. 1992 (aka The Blue Book).

For ICD-11, the equivalent publication will be The Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders.

These texts have been drafted and have been put out for review by clinicians via the Global Clinical Practice Network:

https://gcp.network/en/icd-11-guidelines

The draft guideline includes the Essential (Required) Features, Boundaries with Other Disorders and Normality, and Additional Features sections. Additional sections (e.g., Culture-Related Features).

Only registered clinicians could sign up for this and there is no public access for reviewing the draft texts in this forthcoming guideline, so I've had no access to these guideline texts.

The WHO Director- General published this brief report on ICD-11's forthcoming release

Report by the Director-General Update on 11th Revision,
WHO EXECUTIVE BOARD EB143/13, 143rd session 9 April 2018
Provisional agenda item 5.29 April 2018, Provisional agenda item 5.2

http://apps.who.int/gb/ebwha/pdf_files/EB143/B143_13-en.pdf

But it's not clear whether the The Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders is one of the companion publications that will be ready by June or will be ready at some point between June and when the ICD-11 is presented for WHA endorsement in May 2019.

Extract:

 

It is the case that ME was located under the Diseases of the nervous system chapter for ICD-10, when it was published in 1992.

However, for ICD-11 (for which an initial version is scheduled for release in June) things are not so cut and dried.

This is the current situation with the G93.3 legacy terms for ICD-11:

https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf

Progression of PVFS, ME and CFS through the ICD-11 drafting platforms

Key events in the timeline: tracking the progress of the ICD-10 G93.3 legacy terms through the initial iCAT, Alpha and Beta drafting platforms, from May 2010 to May 2018.


See particularly:

and


Extract from Notes to above document:

Whatever is in the Beta draft at the point at which the draft is frozen at the end of May should go forward to the initial release in June, though not all chapters may include “Description” texts.

After release, ICD Revision might potentially post new proposals for PVFS, ME and CFS via the Proposal Mechanism, which will remain open for submission of new proposals.


There is a new thread here for up to date and accurate information on ICD-11 and other classification and terminology systems:

Updates on status of ICD-11 and changes to other classification and terminology systems

https://www.s4me.info/threads/updat...-classification-and-terminology-systems.3912/